FPIES stands for Food Protein Induced Enterocolitis Syndrome and our youngest son has it. This blog follows his story on this journey: our challenges, our triumphs, our adaptations as we navigate through this new world created by FPIES.

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Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Saturday, December 31, 2011

"Mommy, I need you"

Little man started this about 1-2hrs. before the vomit the other night.It is new.Holding out his arms, he stood by me and said “mommy, need you”.

From there, the symptoms continued to build, whiny and clingy and then throwing things and crying, and then the vomit.Potato now goes on the shelf.

As I try to decipher through his reactions and symptoms (symptoms we may have missed before getting to vomit).My thoughts also go back to when Little man had the sepsis in his PICC line- how the symptoms came on suddenly, the chills/fever/rapid breathing; followed by vomiting….for little man, this happened twice, and then shocky symptoms appeared, after the third time came the full shock reaction.The body could not expel the toxin because it was in his blood.How similar is this to FPIES reactions?The toxin is the food, that is in the GI tract (and “leaks” into the blood) and the body works to expel it (the vomit/diarrhea).But what happens if the body doesn’t expel it?Little man doesn’t get immediate to shock symptoms (acute FPIES) from foods; my theory is that they are septic in his body before/instead of that.The reaction from the food-perceived-toxin is a sepsis like reaction; labs done during this time show that his body is struggling with what looks like an infection.Continued ingestion of the trigger food “builds” this toxin in the body, thus further weakening the body under this sepsis. The first time the body succeeds and expels the food, it is a sepsis response; continue this and the body becomes more efficient at expelling the toxin and the sepsis quickly becomes shocky symptoms.Each food can be different set/order of symptoms to this reaction, as the body struggles to either accept it or reject it.The mechanisms and reasons to why his body accepts some foods as safe and perceives others as toxins remains a complete mystery.

Fluids help the body cope with a sepsis reaction, they are part of the treatment for it- the hydration helps keep the body out of shock as the sepsis affects every organ.Little man is on IV fluids every night with his TPN, I really have seen how this has helped his body cope through these reactions the past few weeks.And I am grateful.

And where does the pain come from?What kind of pain is it?Recently, I had a touch of the flu- my body was fighting a toxin and it ached all over.I didn’t have a fever, I just ached everywhere.I wonder if this is similar to what it feels like for him. His body is attacking a perceived toxin, so is this how he feels every time? When he was under a year, I used to give him some motrin to help with the pain- between the teething and the chronic FPIES symptoms, he lived in chronic pain, so when there was a spike in this pain- I would treat it with some motrin. Unfortunately the motrin only helped some- he would get pain relief for ~2hrs., and then he would be in worse pain than before.I thought that was odd since ibuprofen was supposed to last ~6hrs!Once we got him compounded ibuprofen, it made a world of difference!Pain relief that lasted 6hrs.+ and didn’t cause more pain!I also remember thinking (and saying) that it seemed to me to be pretty significant pain, that if an adult was experiencing it- we would surely ask for a morphine drip! And yet, my son’s only comfort is occasional ibuprofen. Well, ibuprofen and daddy or me; and so he says, "Mommy, need you".

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Global FPIES Day

The FPIES Foundation

This blog is the sharing of our personal story of FPIES and the specific accounts, details and perspectives about how FPIES affects our Little Man. FPIES is a syndrome and can present with a spectrum of symptoms. A medical team familiar with FPIES can help with the specific needs from symptoms that present in your child. Information shared here does not represent the views of any organization I may work for or be associated with, and should not replace your own instincts or the advice of a doctor knowledgeable in FPIES.

What is FPIES?

In my own words...FPIES is a severe delayed food allergy of the gut, it is understood to be a T-cell mediated response, a Non-IgE Food Allergy in which food is considered a foreign invader and the body fights, or attacks it, until it can violently expel it; although the exact mechanisms are still not well understood.

Symptoms include: profound vomiting (often to bile), diarrhea and/or constipation. These symptoms can quickly lead to: lethargy, low body temperature, low blood pressure and in severe cases, sepsis-like shock. And still yet, many parents report children also experiencing many discomforting symptoms while the body fights this reaction and these can include: extreme stomach pains, excessive gas, runny stools with or without mucus/blood, acid reflux, rashes/eczema, sleep disturbance, and agitation/inconsolable crying.

FPIES is a clinical diagnosis (based on symptoms and history) there is currently no test for it.

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About Me

I am a mom of 4 boys. Our youngest has FPIES. I also work part-time as a Registered Dietetic Technician. Nutrition is my passion, my career, it now envelopes my entire life...
I am taking this one day at a time, putting together pieces of the puzzle for our Little Man's FPIES.
www.thefpiesfoundation.org